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Did you know that 1 of every 125 males born in the US
has hypospadias? If you consider all children born with a difference
of sex development (DSD), the incidence is about 1 in 100.

That's about the same frequency as being born with red hair! The frequency
of occurrence differs by country, but hypospadias is a common birth
difference all over the world.

The point is that this very common congenital difference affecting
the urinary tract and genitalia is virtually unknown to the general
public. Hypospadias (HS) is kept secret, because people don't talk
about those parts of their bodies involved in elimination and sex.
Unfortunately, the secrecy causes some serious problems.

Epispadias (ES) is a separate congenital difference affecting the
urinary tract, bladder, genitalia, and pelvic structure. It is sometimes
accompanied by exstrophy, where the bladder (and sometimes other abdominal
organs) are not enclosed within the belly at birth.

Epispadias in males is much less common than hypospadias in males.
Female epispadias is even less common and female hypospadias is very
rare.

However, like male hypospadias, these conditions are kept secret because
people don't talk about congenital differences of the penis, vagina,
urethra, or bladder. Secrecy is almost always associated with emotional
problems.

Hypospadias and epispadias have medical implications that range from
mild to very serious. The emotional, psychological, and social implications
are often even more serious than the medical ones and can affect people
throughout their lives, from infancy to old age.

For people with hypospadias or epispadias, the secrecy can be
associated with feelings of being deficient or damaged, in addition
to feelings of anger or rage, depression, and shame. Parents may
struggle with guilt, even though they are not responsible for their
child's condition. Everyone is impacted by the secrecy associated
with genital and urinary differences.

Most people with hypospadias or epispadias have never met or talked
to anyone else with one of these conditions. Parents of children
with HS/ES are in the same boat. Isolation adds to the serious complications
caused by secrecy.

Hypospadias and epispadias come about because some cells and cell
systems develop differently from the way they typically develop in
the human fetus. Contrary to popular news reports, the causes of these
conditions are not yet known.

People with hypospadias or epispadias have the same worth as all other
human beings. They are not deficient and have no logical reason to
feel shame, but the secrecy and isolation surrounding all birth differences
involving the urinary-genital systems often lead to the development
of feelings of deficiency, shame, anger, and depression.

How does HEA help?

The Hypospadias and Epispadias Association, Inc., offers support so
that people with HS/ES never need to feel alone. People with HS or
ES and their families can use the resources we offer to make informed
decisions about surgery, relationships, and sexuality. Our message
board, chat rooms, shared stories, and conferences ensure that no one
needs to feel isolated, deficient, or shameful.

We provide opportunities to develop pride in ourselves and compassion
for others by sharing our stories, reaching out to others in our community,
volunteering to serve by becoming members of the HEA board or committees,
advocating for better care and better choices, and educating the public.

What is HEA?

The Hypospadias and Epispadias Association, Inc. (HEA) is an organization founded in the year 2000 for the support and
education of people born with hypospadias or epispadias and their families,
loved ones, and medical care givers. Although HEA is based in the USA,
we invite participation from all people in all countries who have an
interest in these congenital differences.